Now nothing is better than good ol' charity that's out there doing right for their community with a loving cause. On Both Fronts is proud to showcase a lovely charity by the name of Magical Mail (sometimes known as Magical Mail Boxes). They send out cards or boxes filled with goodies to children who are either sick or genetically fragile. Items depend on the senders choice and can range from stickers to books to pajamas, to movies, to whatever they like!
Why was it picked? Because they cater solely to the special needs/medically fragile community. Here's why we love 'em:
It's a scary word. Neuropsychology. And a mouth full, too.
Now when faced with the possibility that something might be wrong with the one we love, many find that fear is the first response. I feared to see a neuropsychologist because I knew it meant that an official label would be attached if he found what I knew he would. Let's break down what neuropsychology is.
Out in public, any crowded restaurant or mall, and then there is a little kiddo who has a long white/tan tube coming from under their shirt and to a backpack slung over their mother's arm. You look. You stare. You might even dare make a comment. But do you know what that is under there? Do you know why that child has that tube attached to them?
It's their food. What they need to live. And admittedly, it sounds off-putting. At first. A feeding tube is only another way to gain calories. Another way to eat. So lets learn a little bit about them and help dispel some of the discomfort surrounding the idea.
As Featured on Tova Leigh's Blog: My Thoughts ABout StuffWe feel it. Baby fever. A friend has a baby, and we simply get one whiff of that new baby smell and it hits us like a train. We want another baby. The thoughts and feelings of being a parent to a newborn surround us like a nice warm blanket. However, once we announce our intentions, people are quick to break down our need. You want another one? Haven't you learned enough from your other child? Why would you want to roll the dice again? You might get another child like your first. That's too much. That's a bad idea. Your genes are clearly defective.
I posted on Instagram about a month ago about this product I found just browsing around a natural grocery store. It got me really curious; I hadn't heard of this supplement before. So, on a whim, with an extra $20 to spend on a completely unknown substance for my child, I bought it! And boy oh boy, have I been surprised with the results. The changes in my son's abilities have been immense and noticeable, and even though there is limited research to back up this supplement as having an impact in children, I've found that it does amazing things!
Read below to see just what things I've seen. WARNING: The Youtube video posted below (Belongs to Real Stories, NOT On Both Fronts) can be seen as "graphic" to viewers with a weak stomach. Some of the images can be seen as disturbing, however they are real life images of those who suffer with these genetic disease so exposure is the most important thing. Exposure equals understanding. Understanding equals tolerance.
So I'm writing this article to share an interesting story, one that I had no idea even existed, until I stumbled upon this amazing story while finding Youtube videos for my playlists. I instantly become fascinated by their story, and couldn't stop watching the video even though it was like thirty minutes long. I HIGHLY recommend watching the video. Although my start with special needs started long before Seamus was conceived, he seemed to be the start of my journey. He just took my entire world and flipped it on it's side. AT BIRTH! Like everything else he does, Seamus made his entrance into this world a grand one. Plenty of dramatics, and worry. What else was fitting for my little fighter? This little alien is really the first time I remember seeing Seamus. In the NICU after they had carted him away hours before without really any word or explanation. And all anyone could think was "What is this?" He was different, right off the bat. We knew he looked different, barely cried, had bent fingers, overlapping toes, legs are were always crossed and he never opened his eyes. Ever. Things snowballed from there making his condition seem more and more serious. One month later, we were allowed to take him home for the first time. On Both Fronts, the Instagram blog, starts after a few months of being home and needing some outlet to other parents like me, though I was convinced there weren't. One amazing woman reached out to me through some kind of hashtag that found one of my posts about Seamus and she comments an innocent comment "Oh, he looks so much like my son." Though I don't believe they truly resemble each other, I checked out her posts to find her son's diagnosis (children with genetic syndromes tend to resemble other children with the syndrome). Instantly after finding what little I could on the syndrome known as Ohdo I contacted the genetics team at the Children's Hospital with a name and strong belief that this is what my son has. They agreed with me. Before my next appointment, they said they'd be prepared and well read on the syndrome to know the best course of action for Seamus. Ohdo syndrome (SBBS) is rare genetic condition that results in the alternation of the KAT6B gene which blocks a protein from developing properly. It isn't the result of anything done during pregnancy, environment or ethnicity of the parents to cause the syndrome; nature decides. The syndrome affects both sexes easily, unlike autism, so girls are diagnosed just as much as boys are. Still, genetic counseling is recommended to parents to weight the chances of possibly conceiving another child with the disorder by a number of egg or sperm cells possibly being created with the gene alteration. Chances of conceiving another child with the syndrome are incredibly low. One of the main identifies of the disorder are the shortened fissures (eye openings) and hypothyroidism. Learning difficulties are also associated with the syndrome but are a wide range of disability depending on the child. Most of the other characteristics of the syndrome are variable, meaning that it doesn't have to happen. 50% of the children are deaf/blind or both. Seamus is neither! See? It all depends. That's how genetics goes. To Learn More, Click Buttons BelowSeamus continues to fight against the odds that SBBS stacked against him. We still must put braces on his feet at night, so that his foot might be straight when he walks. Every day at nap time, he wears hands splints to open up his clenched fists. We go to the doctor often to monitor his weight gain, his vision and hearing, his swallowing difficulties, and for his thyroid. Each week we have many therapy appointments to keep him strong and help his muscles build stamina. Early Intervention stops by every other week to watch his progress and make sure his meets are met by us. Needless to say, I'm a busy SAHM. At a year old, he sits up. He doesn't walk, or take steps, or even crawl. It probably won't even happen until he's four years old. His feedings are all done through a tube in his stomach. We've slowly started giving him baby food but progress is slow. Who knows how long is g-tube will be in there! But we still hold out hope for him. If anything marks kids with Ohdo it would be determination. They constantly learn skills, trying to become as independent as possible. All of them overcome odds stacked against them. Seamus has surpassed even the wildest dreams of his doctors which is saying something. So in the end, we got one of the best kids in the world. One who gives it his all, fights until the lights go out. Sometimes that's the ones you need to give you strength, because if he isn't giving up, then I'm sure not going to. Be sure to follow us on Instagram @onbothfronts |
AuthorGabrielle Rae is a special needs, stay at home mommy of two boys. She enjoys reading and writing novels in her spare time. @onbothfrontsArchives
August 2018
Tell me. |